studying health outcomes after treatment in patients with retinoblastoma

Conditions: Retinoblastoma; Cancer Survivor; Biological Sibling; Intraocular Retinoblastoma; Unilateral Retinoblastoma

Summary: this trial studies health outcomes after treatment in patients with retinoblastoma. gathering health information over time from patients and family members through vision assessments, samples of tissue and saliva, and questionnaires may help doctors learn more about what causes retinoblastoma, identify long-term health outcomes for patients with retinoblastoma, and find out which therapies may be the best for treating retinoblastoma

primary objectives: i. define acute toxicity, subsequent malignant neoplasm (smn) risk and visual outcomes in retinoblastoma (rb) survivors and compare patient centered psychosocial and neurocognitive and physical outcomes in survivors with normative data and sibling controls. ii. create the first clinically-annotated patient tissues to analyze gene interactions to assess biologic correlates of disease and facilitate future research: the riverboat-captain biorepository, including germline deoxyribonucleic acid (dna) and tumor tissue from patients, with detailed patient, disease and treatment-related information. iii. using the riverboat-captain clinically-annotated biorepository, determine the interplay between specific rb1 mutation type and the role of additional modifier genes in determining those tumor phenotypes that drive treatment decisions. outline: patients are assigned to 1 of 2 cohorts. retrospective cohort: patients treated between 2008-2018 undergo collection of saliva samples at \>= 6 months after treatment, and undergo vision assessment at \>= 6 months after treatment and again 1 year later if necessary. previously collected tissue samples at the time of surgery are also obtained. patients also complete questionnaires at \>= 6 months after treatment and again 2 years later. prospective cohort: patients treated between 2018-2023 undergo collection of saliva samples at the time of enrollment and at 6 months after treatment. patients also undergo vision assessment at the time of enrollment, at 6 months, and 18 months after completion of treatment. patients also complete questionnaires at 6 months and again 2 years later, as well as undergo collection of tissue samples at the time of surgery. immediate family members with history of rb or rb1 gene mutation also undergo collection saliva samples.

Eligibility criteria:
* unilateral or bilateral intraocular retinoblastoma * diagnosis between the ages of 0 - 17.99 years * diagnosis on or after january 1, 2008 * no exclusions based on primary or secondary treatment modalities * retrospective group patients must be ≥ 6 months post end of treatment at study entry * for those already at this timepoint, they are now eligible * for those in treatment, or otherwise not yet at this timepoint, they are eligible once at they are ≥ 6 months post end of treatment * prospective group patients must not have begun treatment * patients with diminished capacity will not be enrolled. * language: patients must be able to communicate in english, french, or spanish * sibling cohort: one sibling, not affected by retinoblastoma will be enrolled, preference for the sibling closest in age to the rb patient. * regulatory requirements: all patients and/or their parents or legal guardians must sign a written informed consent. all institutional, fda, and nci requirements for human studies must be met.